Discussions By Condition: I cannot get a diagnosis.

I'm sick and tired of being just that.

Hi I am 27yr old female with 2 children, ages 5 and 15 months. My 15 month old still doesn't sleep through the night, currently working on that at sleep school.

Let me start where it all began

.In sept 05 I had a baby(no 2) only complication was oligohydramnosis (low amniotic fluid).not serious..december 05 between xmas-new year I had a severe bout of gastroenetritis..february 06 I had what I though was a cold/flu, it turned into a nasty chest infection, went to doctor found out I had whooping cough ( i was immunised as a child), i had this for almost 3 months before i finally got rid of the cough.

since then I have suffered from the following;

heartbeat like feeling in the stomachtender stomach, sometimes abdomen looks a little swollenpoor appetiteweight losssometimes nauseaheadaches, almost daily; sometimes so severe I cannot even standvisual problems, mainly feels like my eyes are trying to go in different directionspoor concentrationoccasional muscle aches, mainly below elbow or below knee.and fatigue (probably from lack of sleep!!)

I have been to doctors alot , they have not run ANY blood tests, the only test I have had done was a gastroscopy and stomach biopsy (tested for h.pylori and coeliac) all was normal, no ulcers or gastritis.The docotor then told me I have IBS, can I be given this diagnosis without any other tests being done?? I don't think this is IBS.

If any one could please help me I would be most gratefull. I cannot go on like this anymore, I have two children to think of.

21 Replies:

sometimes the blood test for celiac can come back negitive and you can still have it.I would reccommend getting the biopsy for celiac!!or testing out a gluten free diet for a week or so to see how you feel!!! You deffenity sound like you have celiac and you have all the symtoms I had before I was diagnosed!!Good Luck!!!

Hi, thank you for you reply. I was tested for coeliac when I had the stomach biopsy done, results were negative. My aunty has this also and she was convinced I had it too. Thanks again, Kitty k (>"
kitty k
31 Replies

it is genetic so you have a lot of positive factors going for you! hope everything works out for you! How was your coeliac diagnosed? If I may ask?And could a stomach biopsy possibly give a false negative result? Thanks, Kitty K (>"
kitty k
31 Replies

mine was diagnosed with first a biopsy then a blood test for reassurence. My father also has it, and he was diagnosed with a blood test.I am sure that there is always that possibility that the biopsy can accidently bcome out negitive and you can actually have a positive gene for it. Nothing is 100%. They say to make sure you are not on a gluten free diet when you are having your biopsy because that will make your test come back negitive because your body will already start to heal.You could always do something called the gluten free challenge like i stated before. Go on a gluten free diet (no wheat, rye, barley, or oat) for a week or 2 and see if your stomach pain goes away. IBS is really just a manifestation just like fibromialga (sp). It just the answer the doctor gives you when they cant figure out whats wrong. But with you having the gene for celiac in your family I would deffinitly consider another testing option or something. http://en.wikipedia.org/wiki/Celiac_diseasethis site should really help you with more information. but if you have any questions feel free to ask I have had celiac for 7 years.

oo but if you mean what where my symtoms for my diasgnoses they wereawful stomach pain, had to bend over in a ball in the bathroomnauseas/ awful nauseawieght loss, i was very underwieght for my agepoor appetite/ never really ate because i was so nauseas

mine was diagnosed with first a biopsy then a blood test for reassurence. My father also has it, and he was diagnosed with a blood test. I am sure that there is always that possibility that the biopsy can accidently bcome out negitive and you can actually have a positive gene for it. Nothing is 100%. They say to make sure you are not on a gluten free diet when you are having your biopsy because that will make your test come back negitive because your body will already start to heal.You could always do something called the gluten free challenge like i stated before. Go on a gluten free diet (no wheat, rye, barley, or oat) for a week or 2 and see if your stomach pain goes away. IBS is really just a manifestation just like fibromialga (sp). It just the answer the doctor gives you when they cant figure out whats wrong. But with you having the gene for celiac in your family I would deffinitly consider another testing option or something. http://en.wikipedia.org/wiki/Celiac_disease this site should really help you with more information. but if you have any questions feel free to ask I have had celiac for 7 years. Thanks for you reply.I went to the web site you recommended, it also says you can give a false negative from one biopsy, they recommend several different biopsies taken from more than one location. I might try another doctor, if i get no answers there I am going to try a gluten free diet, see if there are any changes. Thank you for your help, I will let you know how I get on. Kitty K (>"
kitty k
31 Replies

I 've found your questions very interesting. At first I thought you may have IBS because you have some of the same symptoms that I have. My dr. said that I have it but never really did a diagnosis. I was also diagnosed with fybromyalgia. I don't think all the necessary tests were done to rule out everything else but because my mom was diagnosed with fybromalgia they decided that's what my problem was too. I went onto this sight looking for information about my daughter. She recently passed out at daycare and has had some strange symptoms that a friend said may be celiac disease so I was surprised to see what I thought were my symptoms now being associated with hers. And I'm wondering if I in fact was misdiagnosed and may have Celiac disease and passed it on to her. She is terrified of going to the doctor and I know a intestine biopsy would be unpleasant for her. I'm wondering if maybe I shouldn't get tested first?

I 've found your questions very interesting. At first I thought you may have IBS because you have some of the same symptoms that I have. My dr. said that I have it but never really did a diagnosis. I was also diagnosed with fybromyalgia. I don't think all the necessary tests were done to rule out everything else but because my mom was diagnosed with fybromalgia they decided that's what my problem was too. I went onto this sight looking for information about my daughter. She recently passed out at daycare and has had some strange symptoms that a friend said may be celiac disease so I was surprised to see what I thought were my symptoms now being associated with hers. And I'm wondering if I in fact was misdiagnosed and may have Celiac disease and passed it on to her. She is terrified of going to the doctor and I know a intestine biopsy would be unpleasant for her. I'm wondering if maybe I shouldn't get tested first? I would probably be best if both you and your daughter get a blood test first, although the biopsy was not painful. The biopsy is just more accurate than a blood test.

that is correct. But she might have gotten the gene from her father even if he experiences no symptoms at all. You might want to both get tested by blood work and then if they both come back negitive then you might want to go ahead with teh biopsy for your sake. Celiacs disease has the exact symtoms of IBS and will make you feel so much better once you are put on teh correct diet. even if she hates the doctor, if your daughters passing out in daycare I would reccommend you take her and get her tested!!

Its stressful, its easy to make mistakes, its fairly expensive if you want convenient food but you can do it cheaply if you have time to cook.But, if you feel a difference on it, its totally worth it. I don't have a blood test or a biopsy dx but I had to do whatever I could to get rid of these symptoms.Since gluten is such a popular additive in processed food, it cuts out a lot of junk foods that just aren't good for you anyway.

Please visit this website at www.wholeapproach.com. It is a website for candida overload and has many helpful links. I recommend the food lists as it has a very good breakdown of foods you should and shouldn't eat. Also, take the written questionaire and see if your symptoms fit the profile. Candida can cause many of your symptoms and is hard to diagnose. DO NOT CHOOSE WESTERN ANTIFUNGAL MEDS AS THEY ARE VERY HEPATOTOXIC! There are some good cleanses you can do. Going on a gluten free diet is a good idea, but I would try the food suggestions on this website. It is NOT so expensive and much worth it if your symptoms improve. At the very least take a good quality probiotic and digestive pancreatic enzymes. Lastly, try acupuncture it is very helpful for gastrointestinal problems. Hope this helps.Doctor of Oriental Medicine

This is the person who first told you you shoudl get tested for celiac!!I read on a website that.."Frequently the symptoms are ascribed to Irritable Bowel Syndrome, only later to be recognized as coeliac disease. Approximately 5% of patients initially thought to have Irritable Bowel Syndrome are found to have coeliac disease."and thought of you!!Hopefully you will get tested!!!Good Luck!!!!

You can also be gluten and/or lactose intolerant and not have celiac disease. In my research over the past year+ it says that biopsies may have flase negatives. I had the rash associated with celiac and once I was gluten free it was gone, that was pretty convincing to me. Whenever I am around flour...like New Year's Eve making my daughter's wedding cake, I break out. My doctors aren't convinced, but I am. I also had vitamin b12 deficiency and anemia all my life, hmm......they are finally gone without all the shots and supplements I was taking. You should also have your gall bladder checked....celiac kills gall bladders as it did mine. I used to have migraines that needed hospital attention at least once a week...while on a bunch of preventative medicines....medicines are gone and I only get onw about every three months now......the list goes on. I can't lose anymore weight, I am in size 0 now......Burlington VT says I am not sick enough to admit because I take all the preventative measures that I can, but I am not going to stop and have to crawl into the hospital, then it may be too late. Celiac disease can be terminal and is a scary thing. I say, go gluten free and have your gall bladder tested. Anne